Posted 11/21/2013 5:47 PM (GMT 0)
@Rabbit-numbers: No offense taken whatsoever. Yes, on the whole I think you got it correctly that my biggest problem has been with accepting the ileostomy. I'm talking solely from a physical point of view and not taking into account other problems with my life, which were always there but easier to ignore while I was ill.
And I was ill for a long time. I was diagnosed 13 years ago in 2000. And I was never in remission once until this year. The first 5 years were mild enough, but ever since then it's just been a long and gruelling ride. I was fatigued, anaemic, lost a lot of weight, the diarrhoea got worse. I would have phases of debilitating, high-grade fevers. At one point I was sent to a haematologist because my blood test results were so wacky (this was at my first hospital, where they literally didn't tell you anything and I didn't know enough to ask).
And then in later years, I developed a stricture at the terminal ileum and had obstructions. Started Remicade in August 2011: a month later, I started getting spiking fevers, which spiked a little higher each night. If you want unglamorous, here's unglamorous: on the night before I went into hospital, I felt too ill to sit on the toilet. But I also needed to go. So I took off my clothes and just lay down in the bath for hours, too ill to move and crapping myself. With a temperature of 40.5C you can't do a lot.
I ended up staying in hospital for a total of 14 days. In retrospect that was the beginning of the end of my colon. Found out later on that the surgeons had wanted to operate on me then. But because I was still relatively new to Remicade, the GIs argued for giving it more time to work and won. I also found out later on that an abdominal x-ray showed a dilated transverse colon, which the report said looked like toxic megacolon. Anyway, the Remicade continued to fail to do a single, solitary thing, but the iv steroids kicked in and got me into a steroid-induced remission.
But steroids are such a troll drug. *shakes head* They give every appearance of making you better without actually making you the slightest bit better. Cue several more pain-filled relapses, hospitalisations, and more steroids, before I finally became a gibbering wreck and booked surgery. If I had been slightly worried that all the Pred I had been on had healed my colon, I needn't have been. Got the pathology report afterwards; I had severe acute inflammation, severe chronic inflammation, severe transmural inflammation. Don't think there was a healthy cell in there.
And I think I managed to digress even more than last time. Sorry about that :-/
Anyway, to answer your question about Crohn's, yes it can come back anywhere in the digestive tract. In reality, it tends to come back at the join after resection. It is least likely to come back at the ileostomy and most likely to come back in a j-pouch (which is constructed from the ileum, where Crohn's most commonly strikes).
And yeah, Pluot is right, I do have chronic depression. Can add chronic anxiety to that, too. Oh the fun I have... ¬_¬